Tinnitus, how can I cope with this symptom?

I am fairly new to this illness, I was diagnosed recently. I just had my first dose of Rituxan on Monday and am on a reducing course of prednisone. I did a week of 60 mg pred, then 2 weeks of 30mg, now on 2 weeks of 25. Most of my symptoms have somewhat improved, my most severe one at the time of diagnosis being sensorineural hearing loss and constant middle ear leakage. However, after the 2nd week on 30 mg of prednisone I felt the tinnitus was getting worse again after a big initial improvement. Some of my head and ear pain is coming back.

I know tinnitus is just one of those things doctors really don't know much about and I'm hesitant to see if I should up my pred dosage due to it, because eventually I need to get off pred and if it's only going to help the tinnitus temporarily it's not worth it. Ive also had an MRI that was normal (other than sinus inflammation) so I wonser if my head and ear pain is just nerve damage that cant be fixed.

I guess I'm looking for support and advice as this symptom has been so hard on me emotionally. It is unlike any pain or discomfort I've felt (and believe me, Ive had some!) and I feel I just can't get used it, it has just overtaken my life. The depression and anxiety from it is so bad. I felt I was doing better with it for a while and this increase seems worse than even before beginning pred. It could be I'm getting some emotional side effects from the pred and thats making it harder for me to deal with it. After my first infusion I've also being feeling very tired, achey, and "off."

If your suffer from tinnitus because of GPA, how did you learn to cope with it? I go to therapy, meditate, try to take walks, try to fit in activities I enjoy, but nothing helps. Ive had it for 5 months now and was hoping I'd be used to it by now. I already got hearing aids and those seemed to help initially but now they don't make too much of a difference. My hearing has really improved, which makes it all the more puzzling why the tinnitus got worse.

I’ve had tinnitus for years and had it before GPA. It’s a constant high-pitched squeal.

I also had senso-neural hearing loss (thanks to no earplugs while in the army, working in a steel mill, and some loud concerts) before GPA, but GPA made it worse.

My pred dosage does not seem to have any impact on tinnitus. Unfortunately, it’s something that’s not likely to go away.

I wear hearing aids, but they’re a mixed bag. I hear a fuller frequency range of sounds. While I hear everything, I still have trouble differentiating voices in crowded, noisy environments. Without hearing aids, I hear mid-range frequencies ok, but not bass and treble.

As far as reducing (tapering) pred is concerned, slower is better — especially once you get to lower doses. The trick is finding the balance between controlling GPA symptoms and pred side effects. I’ve been off pred for almost two years, and I only get one 1000 mg dose of rtx a year. I feel fine and do pretty much what I want (I’m 73).

I hope I haven’t been too discouraging. You’re pretty new to all this, and you’ll probably get (significantly, I hope) better, but sometimes that takes time. It took me most of three years to achieve a stable remission.

Don’t be afraid to ask your doc questions about the disease, your treatment, progress (or lack thereof), symptoms, and medication side effects. Also, ask how much experience s/he has treating GPA. A small number of cases should point you to a referral to a vasculitis specialist.

Good luck...

I lost my hearing and balance in my right ear from GPA. I had poor hearing already in my left ear from several surgeries necessitated by years of infections and only had my inner ear left which gave me limited hearing with a strong hearing aid.

Once I attained a drug induced remission of the Wegener's I was able to get a BAHA installed two years later. I had a lot of tinnitus during this time after losing my hearing. My ENT doctor said it was my brain trying to create some activity since there was not any stimulation from outside sound. My speech also deteriorated significantly during this two year period.

Once I got the BAHA installed the tinnitus seemed to decrease as I once again had natural sounds giving input to my brain. And my speech also slowly improved. I still have episodes of tinnitus but they seem less bothersome most of the times. Some times when sleeping the tinnitus noise will be so loud as to wake me up which is strange since when I take my hearing aids off I can not hear any thing like phone ringing or fire alarms. So I then know the sound is from inside my head.

Doctors will tell you there are no good ways to generally treat tinnitus. Some times if you are lucky they might find a cause that is easily fixed like wax against the ear drum or if it is a consistent certain frequency they might find a way to mask it.

I have had episodes of tinnitus for several decades but they became more severe after I lost my hearing from Wegener's. It got better after I got my BAHA but episodes still happen at times. Whenever I am hearing it I have to check my hearing aids and insulin pump and CGM since all of these items frequently have warning alarms that go off which I usually can't hear. Some times I can make it better by adjusting the volume on my hearing aid or re-seating it.

If you are lucky it will either get better or your brain will find a way to ignore it and tune it out. Some times nerves will slowly repair themselves. Large dosages of pred and injections into the ear did not help my hearing loss. But pred does mess with your emotional stability until you get down to the smallest dosages. A psychiatrist might be able to give you some other med to help reduce your emotional hypersensitivity and also proved some supportive counseling to help you cope.

Hi, Solose,
I have some tinnitus but not what I'd call severe. I think it's possible it will either improve or you'll get used to it. What struck me about your post was that you said you'd been on prednisone for only one week at 60mg/day and then dropped to 30mg, after which your symptoms got worse. I think that is too fast a drop. In addition, you just recently started Rituxin, which is known for often taking a month or two to really start working. With that in mind, a slower taper of prednisone would get you through that waiting time possibly a lot better. Maybe you are comfortable discussing this with your doctor or maybe you could get a second opinion from a doc with more WG experience. I of course am not a doctor but am basing this on having read many relevant posts and on my own experience, though I don't take Rituxan. Best of luck getting this worked out.

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I do see see a rheumatologist who is a vasculitis specialist. Honestly, I feel my case is fairly mild. The only reason the doctor put me on Rituxan is because I have some nodules in my lungs and a history of autoimmune lung growths but my lung function is fine. When I spoke to him about my treatment he said a new study just came out showing GPA patients can be successfully treated with lower initial doses of pred than previously thought. I work (or at least did before the COVID-19 craziness) and am around illness frequently so I was ok with that. I hesitate to ask for more pred because all my other symptoms are fairly under control. I hve had some mild pain but wonder if its just permanent nerve damage. I wonder if prednisone somehow temporarily lowers tinnitus in some people but it's not a permanent effect?

My tinnitus was extreme initially. It was a constant presence I could not shake. It is much better after a couple of years, but is still there. Especially when I think about it like now ... I don't know if nerves healed or my mind became better at tuning it out. I would some times use music with headphones (not too loud) to help take my focus away.

It may not sound like a big deal to healthy folks but I understand having experienced it. I believe you will also get better in time. Best of luck.

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Originally Posted by Solose

I I wonder if prednisone somehow temporarily lowers tinnitus in some people but it's not a permanent effect?

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I do think there's a trend towards docs prescribing lower pred doses or maybe faster tapers, which are two different things. I was started on 50mg in 2011, not 60 as you were, and then tapered to 40 and 30, over a couple of weeks can't quite remember. I still felt that was a little fast, but I may have been sicker than you.
I haven't heard about pred lowering tinnitus, but it seems possible, since it is an anti-inflammatory, if the tinnitus is related to inflammation in the ears, sinuses, or eustachian tubes. My ENT could never give me a real reason for the tinnitus, just that it wasn't a real sound, but just brain activity causing the illusion of a sound. Or something like that.


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